Status:
RECRUITING
The PAtients pResenTing With COngenital HeaRt DIseAse Register (ARTORIA-R)
Lead Sponsor:
Universitätsklinikum Hamburg-Eppendorf
Collaborating Sponsors:
Deutsches Zentrum für Herz-Kreislauf-Forschung (DZHK)
Conditions:
Congenital Heart Disease
Heart Failure
Eligibility:
All Genders
18+ years
Brief Summary
Advances in surgical and medical care have led to improved outcomes in patients with congenital heart disease (CHD). As a consequence, the majority of patients nowadays survives to adulthood (adults w...
Detailed Description
The ARTORIA-R is an international, observational research project collecting retrospective data from 18 countries in the period 1989 to 2024 and will thereafter include data prospectively (Figure 1). ...
Eligibility Criteria
Inclusion
- The patient has to be listed as an adult transplant candidate in the country the data is obtained with an age ≥18 years
- The patient has to have a congenital heart defect or an inherited cardiomyopathy (specific; hypertrophic cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy or non-compaction cardiomyopathy) which is often included into the category ACHD
- Data is obtained from the first evaluation for listing or listing for heart-only or heart-combined organ transplantation
- Transfer of anonymised data
- The institution/organization agrees to the memorandum how data is managed, and scientific cooperation is planned between all institutions
Exclusion
- a. The patient is listed for a second heart transplantation (retransplantation)
Key Trial Info
Start Date :
September 2 2020
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
July 30 2030
Estimated Enrollment :
2000 Patients enrolled
Trial Details
Trial ID
NCT04848844
Start Date
September 2 2020
End Date
July 30 2030
Last Update
May 29 2024
Active Locations (1)
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1
University Heart and Vascular Center Hamburg
Hamburg, Germany, 20246